As Matthew grew, Erin and Jeff knew he would need some extra help to meet his milestones. As he was learning to walk, he needed support from a walker to stay balanced while on the move. Matthew received his first Cochlear Implant when he was one and a half, and then another when he was almost four. When Matthew was 3, he was also diagnosed with severe Autism. His mom notes, “There are so many things we have to take into consideration for Matthew. Speech Therapy is a challenge because he needs so much sensory input during therapy. Trying to keep him on track with his autism is challenging. Every week we have PT, OT, and Speech, along with two therapies to help with his autistic behaviors. We did Sign Language and Auditory Verbal Therapy for a while as well. What he needs on a day-to-day basis always changes. He is also just a little boy trying to keep up with his big brother.”
A Journey of Growth and Understanding
By Kelly Fernandez-Kroyer
I live with my husband Sean and our two sons, Ethan and Noah in the north Denver metro area. Both of our children decided to make their entrance into this world early at 32 weeks. After the premature birth of Ethan, we did our due diligence to determine why he had stopped growing in utero and what we needed to do to prevent this from happening in any future pregnancies. Fast forward two years later, we were ecstatic to make Ethan a big brother. This second pregnancy was eventful from the beginning. I had a new diagnosis– a blood clotting disorder–which doctors believe caused Ethan to stop growing. We learned that the best solution to prevent premature birth again was to start blood thinners at 8 weeks gestation. As the pregnancy continued, I was eventually transferred to Maternal-Fetal Medicine because the same symptoms were presenting again. At 29 weeks, I started hospital bedrest to give this son as long as possible in utero. We planned to name this little one Noah. Further interventions were unsuccessful and Noah was delivered at 32 weeks. Being premature, Noah was immediately transferred to the NICU where he would stay for the next 20 days.
When we received word that the NICU was getting ready to release Noah and that all we needed to complete was the carseat test, we were elated. I remember coming in that morning and seeing Noah’s hearing screen certificate saying he had passed. I thought nothing more of it because we knew that there was no history of hearing loss in either of our families.
A Quest For Answers
Because of Noah’s prematurity and at the suggestion of our pediatrician who noticed that Noah wasn’t meeting developmental milestones, we received a referral to Early Intervention. Hearing and vision were part of the battery of tests to be completed. I went with Noah to these evaluations thinking that hearing testing was just a formality because he had passed his hearing screening at birth. He was six-months-old when we got our first “refer” in his right ear during this OAE (otoacoustic emissions) testing. We were told that we should follow back up with them in 6 months to rescreen. We returned in 6 months and again received another refer. Now at a year old, we were informed we should follow up with an ENT to see if we could get further answers on Noah’s hearing. We went to that appointment where the doctor ran another OAE and again, received a refer result. The ENT scheduled us to see the audiologist the following week. His first test in the sound booth with an audiologist was not reliable and was incomplete because our one-year-old boy was not interested. We scheduled more exams, but finally scheduled a sedated ABR (auditory brainstem response) test to get better results. We would learn that Noah’s ABR showed that he had unilateral sensorineural hearing loss at a moderate level across all frequencies.
We thought we had finally received the answers we needed to take the necessary steps to ensure that Noah would be as successful as possible. We were not quite there. Because his previous tests had been so unreliable, his audiologist wanted to complete yet another booth test to ensure all of the results were in agreement with each other. For the next 6 months, Noah’s results seemed to fluctuate. He was responding to sounds that his ABR told us he shouldn’t hear. Being an 18-month-old boy, we also didn’t get cooperation from him at most appointments. Finally, it was decided we should schedule another ABR nine months after his first one had been completed.
We came into this appointment expecting that we would finally get confirmation that his results were similar to that first ABR. After the test had been completed, we were informed that Noah’s results now showed that he did have UHL but that this loss was only in the lower frequencies (500 Hz and 1000 Hz). The ABR showed that his results in the upper frequencies were within the normal range. We were informed that he had reverse-slope hearing loss and further that his hearing loss was not sensorineural but conductive, or related to his middle ear, instead. We were in shock but determined more than ever to do whatever needed to be done to ensure that he could be as successful as possible.
It has been four years since we received that diagnosis and subsequent hearing tests have aligned with his last full evaluation showing UHL. We made the decision to pursue amplification which has proved successful in assisting Noah to reach his full potential. I look back on the emotions that I first felt when we received Noah’s diagnosis. After the shock had worn off, which I admit took longer than I expected, I decided that his hearing loss was not going to affect the person he was going to become. Although we began receiving early intervention services later than we would have liked due to the length of time it took to confirm his results, I am thankful that we were able to provide him with the therapies he needed to assist him in his development. I made it a priority to become as informed as possible on what my son’s identification with UHL meant for him.
I immersed him in as many programs as I could possibly find to make sure that he knew that he wasn’t alone; that there were other children just like him. I have been involved in a UHL focus group and had the opportunity to attend quite a few events and workshops through CO H&V, and am excited that we have both a CO UHL page and a Facebook page through Hands & Voices HQ. I have met many incredible people along the way who have shown me that my son’s hearing loss is not going to prevent him from being the best he can be.
I am thankful that I can share the same hope that I was provided; that being deaf or hard of hearing doesn’t lessen a person’s chance of reaching their fullest potential and that there is a strong support network available for as long as needed. Through this journey, I have learned that success is something that Noah will define for himself. There are no limitations on what he is capable of achieving.
High School IEPs for the Weary Mom
By Amy Scriven
“How weird do you want me to be, mom?” My son is the sweetest, most polite teenager, who would never say that to my face, but I could tell from his sadness and frustration that he was thinking it. “Hearing aids? I don’t need them; I’ve been fine this far in life. IEP? No way mom!” Unspoken, heartbreaking words written all over his face and through his future actions of refusing to wear his aids, hiding his mini mic, and feelings of shame and sadness from being what he would call different.
Late Diagnosis. We adopted our precious Cole from China at age 14, and it took a few years to uncover all of his medical needs, including that he is hard of hearing and the subsequent recommendation of hearing aids. As parents we think, “Okay, this is costly, but not bad, there is a solution, we can navigate this.” Our teen was thinking, “Whoa no way, hold it right there, cowboy. Hearing aids in high school? No way!” Our son went through all the stages of grief over his need for hearing aids, and as uneducated parents, we struggled to guide and comfort him.
High School IEPs. I’m at the age where doctors suggest mammograms and colonoscopies, both more desirable than navigating an IEP meeting. Our first denial of an IEP cited that our son did not qualify because his IQ scores were too high, and English is his second language, which was deemed the sole contributor to his struggles. The fact that he was hard of hearing was skimmed over and labeled, “not that significant,” without even showing us the legal criteria for eligibility. I was crushed and cried at the end of the meeting when Cole was denied IEP accommodations. Yes, our son is smart, yes English is his second language, but the poor dude couldn’t understand the teachers well enough to acquire English at the rate that matched his IQ. My biggest mistake, among many, was not seeking out an advocate specifically for deaf/hard of hearing kids.
My list of Coulda, Shoulda, Woulda’s:
- Seek help from advocates who specialize in kids who are deaf/hard of hearing. Not only did the Hands and Voices team assist me with understanding the IEP process, my son’s rights, how an IEP could help him, but they also guided me emotionally and educationally through hearing loss in general. As a mom of a late diagnosed kiddo, I didn’t fully understand how to read an audiogram, let alone effectively navigate IDEA laws. The Colorado Hands & Voices team spent hours at my kitchen table, over the phone, and through email helping me learn and prepare. Their coaching helped me to be more confident during the IEP meeting and provided my mama heart with some much-needed love, reassurance, and tender care during what was a confusing time for our family.
- Be open to advice. Our son Cole, who is now 18 and much farther along in this journey, does not mind me sharing that he did everything that first year to foil efforts to assist with his ability to communicate and gather information. My response to his actions, which was all part of his grieving process, often made the situations worse. The Hands & Voices team gave both my husband and me, and the IEP team, suggestions to help Cole feel more comfortable speaking up for the accommodations he needs to learn at the rate of his peers. For example, allowing Cole more control over his hearing aid usage, setting up a plan for a period of months where his teachers discreetly prompted Cole for his mini-mic instead of putting the responsibility solely on Cole, and having him meet with a teacher of the deaf/hard of hearing to research and learn about his hearing levels and how to advocate for his needs.
- Come to the IEP meeting with a plan. Research IDEA laws as it pertains to students who are deaf/hard of hearing. Create a list of your teenager’s areas of need with specific examples from both home and school. Also, come prepared with a list of possible accommodations you would like to see for your teen once the IEP is approved. Practice how to describe your concerns to the team and your answers to possible objections. Remember, as a parent your opinion matters, and what you see at home is as valid as the perception in the classroom.
- Consider speaking with the IEP team without your teenager. Cole is a joy to parent. He’s easy going, quick to laugh, and if we are being totally transparent a real mama’s boy. However, he did not think he needed aids for hearing or an IEP. During the first meeting, not only did the educators cite Cole’s insistence of not needing help, but also Cole had to hear over and over my words of how he was not thriving and not performing as well as he could in school. This sent the wrong message to Cole that he was somehow failing, which he was not, and that he was responsible for this perceived failure. One solution is to conduct part of the meeting without your teen. Take a bit of time to review your concerns with the team, and then have your teen join after for the solutions and accommodations portion, so that he or she can feel empowered rather than deflated.
- Plan for transition services. Your IEP team should document transition plans starting at 16, but I found my son still needs much assistance answering the big question, “What’s next after high school?” Stretch outside of the IEP team and attend workshops designed to help you and your child determine areas of interest and the proper track for exploration. The path ahead may include college, Voc Rehab assistance with training and job coaching, or perhaps volunteering for more discovery. You are not alone, there are many organizations that provide transitional information including Hands & Voices.
A year later, armed with copious amounts of research and knowledgeable advocates from Hands and Voices, our kiddo was approved for an IEP that is helping him to understand his teachers and material better, learn to self-advocate, and educate his peers. Most importantly, he’s starting to see himself not as weird, or different, but just as our precious Cole, who truly is a gift from God.
In a survey of even “experienced” parents, a majority did not have a clear grasp of what should be happening during transition the time a child is 14 to leaving high school ready for further education, college, or career. Teens are not clear either. Teachers of the Deaf/hard of hearing (TODs) often support preschool through high school as an itinerant service and thus are not always well-versed in transition IEPs and knowledge.
Students, parents, and TODs need more information and support to learn how to make the most of transition for effective outcomes for teens.
Most of us say “if only I knew then what I know now…”
What are we doing to make transition more effective?
A conference for students, parents, and teachers on Aug 3, 2019 @Denver University Campus
Preview the Amazing Race
By Mah-rya Proper, South Denver Parent Guide
I will never forget that almost-spring day…the day we finally ended up at the audiologist through Child Find.
My oldest son, Augie, was three-and-a-half years old. He had been having meltdowns and tantrums, and was distracted and impulsive. He wasn’t learning his alphabet, even though his 18-month-old sister could recite it easily. He wouldn’t sit and play games or listen to books like he used to. He didn’t seem to listen to me or, especially, my husband. Yet, one-on-one, he could talk forEVER about his passion of the moment. He actively participated in our silent signing meals. We couldn’t quite put our finger on what was wrong, but it was time to find out what was happening.
Hence the perfunctory appointment with Child Find. Before they could do language testing, they would do a hearing test. A former audiology classmate from my undergrad program greeted me. She would be doing his testing. With my younger daughter in the baby carrier, I followed Augie into the booth and the familiar testing began.
All my experience in sound booths, being a friend of Deaf and hard of hearing people, and a practicing sign language interpreter…all of it came flooding over me. I saw my son’s (non) response to the very first tone, and I realized he couldn’t hear. He was Deaf. I just didn’t know “how” deaf he was at that point. I stepped out of the room so my reaction didn’t show or skew his results. I walked outside and cried. I didn’t cry because he was Deaf; I cried because I had woken up that morning with a Deaf son, and the world STILL didn’t know sign language.
I took some deep breaths, composed myself, and went back in. While the audiologist explained the results, I could see the audiogram and his moderate to severe rising bilateral hearing loss. I’d seen audiograms before, many of them. Cookie-bite. Sloping. Pure tone. Aided. Unaided. This one was different; this one was Augie’s.
The Unknown Age of Onset
I flashed back on his early weeks; he referred on his newborn hearing screen in the hospital. The nurses thought it was “just fluid” since he was born by C-section. In the follow up testing at two weeks old, I sat uncomfortably, still recovering from my C-section, nursing a newborn with a pinching latch. Hours later, when the audiologist finally finished, she said he was “fine”. If I had future concerns, I should follow up with my pediatrician. We left, putting aside any notion that Augie might be Deaf.
Until this day. Until this evidence, in black and white. On an audiogram. I had so many questions. How had he passed his screen, but had this loss? Our audiologist suspected a progressive loss since he had speech sounds that didn’t match what he could now perceive. I thanked and hugged my former classmate, and walked out.
My head was spinning. When, and why, and how did this happen? How did I not notice? I had an undergrad degree in this stuff. I had worked with Christie Yoshinaga-Itano on pediatric research published in audiology journals, and here my own kid was late-identified. HE had lost so many opportunities. How long had it been since he had heard us say we loved him? How long since he had access to language? While I was thankful that I could and had signed fluently with him early on, I mourned the paucity of ASL compared to hours of only spoken English in our household. I mourned my husband and parents missing out on learning ASL when he was a baby–it would be hard for them to get ahead of the game now. I began signing full force, all the time, and my husband began to learn.
Simultaneously, we searched for an audiologist and sought out copies of his newborn testing. I called two major clinics and was told there was a month or more wait for an appointment. With years of lost time already, Augie couldn’t wait. I finally found a former colleague still in early intervention who recommended an audiologist, and I shamelessly name-dropped on her voicemail, sharing our story. She got us in quickly and confirmed the bilateral sensorineural loss. We reluctantly agreed to a sedated ABR, and our wise audiologist recommended making his first earmold impressions while he was under. (He previously suffered through a botched wax removal that made him loathe for anyone or anything touching his ears.) Finally, the infant hearing test results came. About 75% of his OAEs were absent. He should’ve been referred for more testing, but the audiologist wrote her own reason for his results: “small ear canals.” I was livid. He most likely had undiagnosed mild/moderate hearing loss at birth. So much time had been lost.
We hurried to meet with a CO-Hear (regional infant hearing specialists in Colorado) and were set up with the Colorado Home Intervention (CHIP) services. At the time, CHIP services were still available past age three if a child’s late identification and birthday warranted additional support through the summer to get ready for preschool. A Deaf mentor came to read teach us how to share books with him.
What I Know Now
While all these medical and audiological appointments proceeded, I went to work as a VRS interpreter, pondering his future between calls. He was not yet four, and I was wondering where he would go to college. Gallaudet? RIT? Who would he marry? Would she be Deaf? Hearing? An interpreter? I felt like his world and options had shrunk to the subset of America who signed. Thankfully, a fellow interpreter and a CODA (Child of Deaf Adults) helped restore my perspective and reframe my thinking. She listened, and reminded me that his world had also enlarged. He now had sisters and brothers in every country around the globe who shared a bond and a deep level of understanding with him. Hands & Voices connected me with another parent of a late-identified child. My friend was right – I needed to focus on the “Deaf gain” versus the “hearing loss”. He gained a community and a first and second language. I gained a support network. We were ready to move forward.
My husband and I enrolled our son at Rocky Mountain Deaf School, a bilingual charter school. Based on his audiogram, I figured he would be a signing kid. While it was easy to find speech therapy, I didn’t know of another place that provided “sign therapy.” He attended RMDS for preschool (in what I call “remedial ASL” for two years) until he came to me and said in spoken English, “Mom, I don’t want to go to a signing school; I want to go to a talking school.” I would’ve never forced my Deaf kid to speak, but here I was forcing him to sign, and he didn’t want to anymore. That was the moment when “what” I knew as a professional was replaced with “who” I knew. As his parent, I’ve been learning about him ever since.
We changed school placements. We did some Listening and Spoken Language therapy with one of the best therapists in Denver (something I would never have pursued under my previous, professional “expert” opinion). We kept signing. We used an FM system without an interpreter. We tried a captioned telephone and VRS. We transferred to a small out-of-district charter with a 504 Plan. In fifth grade, it was clear auditory access alone wasn’t enough. Now he attends a different school with an IEP and an educational interpreter. Through all of this, I tried to expose him to Deaf people, sign, speech, and options. We talk about pros and cons. He gets to make decisions about his access. Last year, he began using an educational sign language interpreter and the Roger touchscreen. This year, he decided to stop using the Roger system but kept the interpreter, when he chooses to pay attention, instead of reading his always-present book.
Next year? Who knows?
Now I know he is going to be fine, well, as fine as any parent of a thirteen-year-old boy imagines their kid will be. He is smart, kind, passionate, and determined. Good Lord, is he determined. I am no longer trying to project what his future will be; I walk with him as he creates his future. He has given me so many gifts: the gift of parenthood, the gift of parenting a Deaf kid, the gift of parenting HIM. I wouldn’t trade this journey for anything.